Shameful silence: Why we need action to end the tragedy over disabled babies born to Muslims who marry their cousins

The Mail exposed the conspiracy of silence over disabled babies born to Muslims who marry their cousins. Here, YASMIN ALIBHAI-BROWN - six of whose cousins died from genetic disorders - says we now need action to end this growing tragedy

My mother had an older sister who was gentle, affectionate and generous. She was married to a first cousin — not a good husband or father — and they had eight children, most of whom inherited serious genetic disorders.

I loved them all dearly, and endured agonies as I watched one after the other die as adults after suffering for years with illness.

Now, only two male cousins are left. One, who lives in Vancouver, has had a kidney transplant, and the other one seems, thus far, completely healthy.

Concerns: Marriage between cousins is still prevalent in some Muslim communities in Britain

The last death was only last year, here in London. A few of their children — my aunt’s grandchildren — are also afflicted. It is like watching a horror movie, except it is real and being played out in slow motion over decades.

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I dread the next shattering blow, the next funeral, and that terrible realisation that it might not be the last.

Living with that emotional pain is one of the reasons why I’m adamantly against marriages between close blood relatives, which are still prevalent in the Muslim community in Britain.

The crusade against this tradition is as important to me as the fight against racism or the rights of women and children.

And before anyone accuses me of stigmatising any particular community, let me say that my father’s family was Pakistani Muslim. I utterly reject the idea that ‘community sensitivities’ among Muslims matter more than disabilities in children which could be prevented.

The issue of these marriages was highlighted by the Mail last week after the estimable Professor Steve Jones raised his concern about this ‘inbreeding’, as he rather coarsely called it.

Speaking to an audience at the Hay Festival, he pointed out that the problem blights European Royal Families, too.

I
would add that strict Eastern European Jewish families once married
blood relations, though that changed with better education and effective
messages about the dangers of these marriages.

Thus,
today in Britain, this custom is found almost wholly within tightly
knit Pakistani and Bangladeshi communities, particularly in Bradford,
Kirklees, Huddersfield, parts of Leeds and some places in the South,
too.

Genetic problems: Many of the babies born from marriage between cousins suffer from ill-health

Here are the facts:
while these families make up only three per cent of births in Britain,
they account for one in three children born with genetic illnesses.

O ne study of 10,000 children, called Born In Bradford, has revealed that
a disturbing proportion of those of Pakistani heritage have serious
genetic illnesses. They are 13 times more likely than the general
population to be born with birth defects. The majority of them marry
first cousins, as their parents did, and that doubles the risk.

Doctors
and researchers who encounter these families are sympathetic and fair.
They are admirably careful with their words, conscious that Muslims are
too often demonised.

But truth will out.

One
consultant paediatrician at Bradford Royal Infirmary describes a family
with six children who have the same genetic condition and will not live
beyond their teens. Imagine how that feels for their parents.

It
is important to remember that a small percentage of non-Pakistani
British children are born with genetic abnormalities, and also that
first cousins can marry and have perfectly healthy children.

That
doesn’t make it any less appalling for those who do have children who
are ill, and could have avoided that dreadful situation by not marrying.

The
great sadness for me is that ten years ago I thought this issue was
gradually becoming less of a problem. Cousin marriages had long been
popular because they maintained familial ties and kept resources and
wealth within blood lines.

But
the entrenched system was weakening, as information and education about
the medical legacy of these marriages began to get through to the
Muslim community. Then, I hoped that in a generation this
self-destructive cultural behaviour would pass. Not so, it seems.

My
social antennae tell me ‘cousin marriages’ are on the up, and I believe
the reason is that these communities are reacting to modern British
society.

These are
families who hate the permissiveness of our culture, and so turn to the
most conservative Islamic teachers. That is leading to a fortress
mentality and elders in the community imposing tougher controls on the
younger generation — particularly about who they can marry. So it is
that we get more forced marriages, and less integration.

Warning: Professor Steve Jones raised concerns about such marriages at the Hay Festival - but added that it also affects other communities

I
was writing about this 30 years ago and never thought the problem would
go on and even get worse. As a young journalist, I travelled with
health visitors and midwives to small, tidy homes in Bradford where we
found children with pitiful physical conditions or severe mental
difficulties.

I speak Hindi
and understand Urdu, and would talk to the mothers, who were terribly
sad about their babies. As were the fathers — who were the mothers’
cousins.

No couple
wilfully creates disabled or mentally ill children. To have a child is
an act of hope and optimism. But instead of understanding why it had
happened, they believed it was God’s will, or that they were being
punished for some sin.

Education levels were low in these homes. I explained it was a medical issue, that such births were avoidable.

At least three mothers I had met had attempted suicide, and, tragically,
one later succeeded. Some of the husbands took second wives — also
cousins — and in two cases I can recall, their children were also
affected.

In the Eighties,
the problem started to be taken seriously by medical and nursing staff,
researchers, community workers and even local politicians and imams.

Now,
highly qualified Muslim doctors and scientists have made a vital
contribution to research and genetic counselling. Experts understand
that in order to have effective medical interventions, professionals
must understand the beliefs, traditions and anxieties of this community
and be able to communicate with families without them feeling
threatened.

Such experts
are also keenly aware of the danger that racists will use information
about the legacy of these cousin marriages for malevolent purposes.

That
said, I feel this serious health issue has been too long hidden in the
unlit corridors of our society. It needs to be out in the open. These
births impact on the Health Service, the families involved and most of
all the children — who never asked to be born with such disadvantages.

The
sad truth is that young British-born Muslims know about genetics, but
feel powerless to stop these cousin marriages going ahead.

E
ncouragingly, on the internet, Muslims are getting bolder in speaking
out. A woman called Shehnaz writes: ‘I am married to my first cousin. My
parents and my husband’s family are also first cousins married. I knew
about genetics, but my family forced me to marry. Now, I have a daughter
with so many illnesses.’

Tragic cases: One paediatrician at Bradford Royal Infirmany spoke of a family whose six children all have the same genetic disorder

Several
of the bloggers who write on the subject are impatient with this
custom. While Muslim ‘advice’ sites still insist that Islam allows these
marriages, they do now advise against them.

But
it isn’t enough, not fast enough. You can’t ban people from getting
together or having children — that is fascism. But forced marriages,
imposed by elders in a family, or by brothers, or even mosque leaders,
break the law and all perpetrators must be prosecuted.

Cousin-couples
should go for genetic counselling, where they can be taught about the
dangers, and even tested to see if there is a risk to them having
children together.

We need high-profile campaigns and less nervousness about confronting the subject publicly.

When
the Birmingham Health Care Trust tried to do this several years ago,
with a campaign targeted at the Muslim community, it was slated by some
for being Islamophobic.

So
what? This is no different from the anti-obesity drives targeting
low-income white families. Where children are at risk, health education
must carry on because behind the arguments about this issue there are
countless human stories of misery and grief, just like the one in my own
family.

In 2003, a girl
called Amina was brought here from Mirpur in Pakistan. She was forced to
marry her cousin six years ago when she was only 16. When they had a
son who was severely disabled, her in-laws said she was a witch and
threw her and her baby out.

Within
days, Amina, whose parents are also cousins, had a serious psychotic
incident and was sectioned, and her baby was taken into care.

When
I was taken to see her by a Muslim doctor from Leeds, her hair had
turned completely white and she didn’t talk at all. There are many more
like her.

When I think of Amina, I ask myself: how can we keep silent about this?

For the sake of the children — and their despairing parents — it is time to act.